Tag Archives: chronic fatigue symptoms

$100 Million for Innovative Lupus Research

December 8, 2009—It was announced last night that over the past decade, the Lupus Research Institute (LRI)’s pioneering science has generated $100 million in new research funding for the devastating autoimmune disease of systemic lupus.

“In powering unprecedented scientific discovery, the LRI has forever changed the field of lupus research,” said LRI Board Member Richard K. DeScherer at the annual S.L.E. Lupus Foundation gala in New York. “LRI scientists have turned $30 million dollars in initial LRI grant funding into $70 million more from the National Institutes of Health (NIH).

“That’s what we call a breakthrough decade!” he said. “An incredible $100 million dollars for entirely new science in lupus–-innovative work that would not exist without the LRI taking risks on the most brilliant scientific minds in the country.”

“The LRI strategy of funding novel scientific ideas in lupus has more than demonstrated its power,” said William E. Paul, MD, chief of the Laboratory of Immunology at NIAID-NIH, and chair of the LRI Scientific Advisory Board. “The LRI model strengthens the lupus research landscape by moving novel concepts forward to secure large-scale federal funding.”

“The speed with which the Institute has changed the outlook for lupus research is remarkable,” Dr. Paul said.

The LRI selects Novel Research Grant awards based on creativity, novelty, and potential to drive scientific discovery. To date, the Institute has awarded $30 million to 108 investigators at 55 academic medical centers across 22 states.

More than 65 percent of LRI-funded researchers have gone on to win extended funding from the NIH to further pursue their work, including:

* Betty Diamond, MD, at the Feinstein Institute for Medical Research (North Shore-LIJ Health System) in New York. The LRI funded Dr. Diamond’s initial work on the role of stress hormones in allowing toxic antibodies to penetrate the brain in lupus and destroy nerve cells there, causing memory loss, confusion, and other cognitive problems. She went on to receive an NIH program grant for $6.5 million to build on strategies to deal with this devastating development.
* Marcus Clark, MD, at the University of Chicago. With LRI funding, Dr. Clark showed that the kidneys of people with lupus actually contain the activated B cells that directly promote inflammation and damage in these critical organs. The NIH provided an additional $1.7 million to further explain and expand on this major discovery. “This government grant was funded based entirely on research supported by the LRI,” Dr. Clark said.
* Greg E. Lemke, PhD, at La Jolla, California’s Salk Institute for Biologic Studies. Dr. Lemke proposed the novel idea that a curious family of “TAM” receptors might function as a core ‘control switch’ over the immune system’s inflammatory response. He received an additional $1.4 million from the NIH and others to explore exciting new approaches to shutting down the uncontrolled inflammation of lupus by restoring immune system regulation. “Without the LRI, this project would have stopped—and a fundamental discovery in immunology would not have happened,” Dr. Lemke said.

“What an incredible investment the LRI has been,” said LRI Co-Chairman Robert J. Ravitz. “It has paid off in a decade of stellar return on results that matter for people with lupus, and my wife and I now have such hope that our daughter Annie and millions of others will soon have answers on how to stop lupus.”

LRI President Margaret G. Dowd added, “We are so very grateful to our supporters for believing and investing in LRI’s powerful research model for breakthroughs in lupus. Their bold commitment is enabling innovative science to successfully blaze the path to a cure and a hope-filled new decade for people with this devastating disease.”

European Think Tank Forms to Generate Research Establishing ME/CFS as Organic Illness

by European Society for ME
June 8, 2009

“More than 5,000 research papers…show that ME has an organic basis…[yet] it has been close to impossible to initiate large-scale research to verify these facts and observations. We will never be able to treat ME properly if we do not initiate this type of research.” – Prof. Kenny De Meirleir

Ten leading scientists in Europe – members of the nonprofit European Society for ME (http://esme-eu.com) – have formed a Think Tank for ME and will hold their first meeting with a press conference Saturday, June 13 in Stavanger, Norway. (See Scientific Panel Member Listing, below.) They want to initiate an effective research effort to find the secret behind the mystery disease that cripples an increasing number of lives.

Myalgic Encephalomyelitis, often referred to as Chronic Fatigue Syndrome (CFS), is a disease which affects at least one million individuals in the US, and an even greater number in Europe. Despite the large number of people affected, there is a lack of serious large-scale research initiatives focused on the disease. The number of patients is rapidly increasing but healthcare personnel lack knowledge about existing research and possible treatments.

Last year’s winner of the Nobel Prize in Medicine, Professor Luc Montagnier of France, says, “Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes.” Montagnier, one of the discoverers of the HIV-virus, is a supporter of the Think Tank.

Treatable Disease
Ten internationally recognized scientists, many of them prominent leaders in their respective fields of research, have decided to do something about it. They have come together in a Think Tank to promote cooperation among scientists from various disciplines and to stimulate intense focus on innovative and creative research.

“There are more than 5,000 research papers which show that ME has an organic basis with abnormalities in the immune, nervous and gastrointestinal systems and that it is influenced by genetic and environmental factors,” states Professor Kenny De Meirleir of Belgium. “Despite these findings, it has been close to impossible to initiate large-scale research to verify these facts and observations. We will never be able to treat ME properly if we do not initiate this type of research.”

Using new biotechnological techniques, much of the underlying pathophysiology of the disease has been unmasked. Several treatable clinical entities have been discovered, but this information does not reach healthcare personnel. The result is that patients remain undiagnosed and untreated for years with something that might be fully treatable. This is a huge drain on the economy, as the estimated socio-economic costs for Europe are estimated to be €20 billion annually.

Educate Professionals
An important part of the Think Tank’s mission is to spread knowledge about the disease. The incidence of ME and the impact on public health are actually higher than that of other better researched conditions like Multiple Sclerosis and HIV. Research shows that ME can be a very disabling chronic disorder which often diminishes patients’ quality of life to levels lower than that of cancer, MS, HIV and lupus.

Professor Ola Didrik Saugstad of Norway states, “There is a total lack of knowledge and understanding about this disease in the healthcare system. We wish to use our knowledge to educate and train doctors, therapists and other healthcare personnel so they can better understand how to manage an ME-patient.”

New in ME
The Think Tank meetings are the brainchild of a new organization, European Society for ME (ESME). This society will focus on organizing research and educating professionals in the field of ME.

“Until now ME organizations have been patient-based and only focused on the needs of the patients, so this is something completely new and unique. We are a group of professionals who want to stimulate new research in the field of ME and to help doctors and healthcare personnel to stay informed about the latest developments in diagnosing and treating ME-patients,” says ESME board member Mrs. Catherine Miller-Duhen.

Think Tank Meeting – Saturday June 13; Press Conference 4 pm
The first Think Tank meeting will be held in Stavanger, Norway on June 13. This will be immediately followed by a press conference at 4 pm, where the specialists will be available for comments and interviews.

Press room, Clarion Hotel Stavanger, Stavanger, Norway.
To register for the press conference and ensure receipt of a press
packet, please send an email to Rebecca Hansen at: icerebel62@hotmail.com

Diagnosis & Treatment Training Conference – Friday June 12
On Friday June 12, a conference will be held to train healthcare personnel in the diagnosis and treatment of ME-patients. It will be open to patients and relatives as well.

SCIENTIFIC PANEL MEMBERS – ESME

Belgium: Prof. Dr. Med. Kenny De Meirleir (2009 Scientific Panel Chair)
Professor of Physiology, Pathophysiology & Medicine,
Internal Medicine & Cardiology, Free Univ. of Brussels.
Clinical expert in ME/CFS. Chair of Scientific Panel ESME 2009.

Denmark: Prof. Dr. Bodil Norrild
Professor of Molecular Virology, Univ. of Aarhus & Copenhagen.
Head of DNA-Tumorvirus Group, Institute of Cellular &
Molecular Medicine (ICMM),
Univ. of Copenhagen.

Germany: PD Dr. Liv Bode
Research Virologist, Robert Koch Institute, Berlin.
Specialist Human Borna virus infection.
Special expertise in development of immune assays & diagnostic tools.

Germany: Prof. Dr. Hanns Ludwig
Professor of Virology, Free Univ. of Berlin.
Specialist in Animal & Human Borna virus infections & Herpes viruses.

Hungary: Prof. Dr. Med. Maria J. Molnar
Professor of Neurology, Clinical scientist.
Established Center for Rare Neurological Disorders – Clinical and Research
Center for Molecular Neurology, Semmelweis University, Budapest.
Pioneered diagnostic techniques in Neuromuscular/Neurogenetic disorders.
Organizer of biological banking system. (NEPSYBANK)

Ireland: Dr. Med. Derek Enlander
Internist, ME/CFS clinician & researcher.
ME/CFS/FM specialist, Mt. Sinai Medical Center, New York, USA.
Author of The CFS Handbook.

Italy: Prof. Dr. Med. Umberto Tirelli
Specialist in Oncology, Hematology & Infectious Diseases.
Director Department of Medical Oncology, Director Division of Medical Oncology,
Chief of CFS Unit, National Cancer Institute, Aviano, Italy.

Norway: Prof. Dr. Med. Ola Didrik Saugstad
Professor of Pediatrics, Director of Department of Pediatric Research,
Rikshospitalet Medical Center, Univ. of Oslo.
World-renowned Neonatal Specialist, WHO Advisor.

Spain: Dr. Med. Ana Garcia Quintana
Internist/Surgeon. ME/CFS clinician & researcher, Unit for CFS,
Delphos Medical Center, Barcelona.
Committee Member of CFIDS, USA.

Prof. Dr. Med. Babill Stray-Pedersen, Norway (Patron, ESME launch meeting)
Professor in Obstetrics & Gynecology, Faculty of Medicine, Univ. of Oslo,
Senior Consultant Rikshospitalet, Oslo University Hospitals.
Executive board member of the European Society for Infectious Diseases in Obstetrics & Gynecology.
Medical advisor of Norwegian Women’s Public Health Association.
Advisory board member of Reproductive Health, WHO.
______
Source: European Society for ME news release June 3, 2009, e-mail post@esme-eu.com

Meeting the Challenges, Creating a New Life pg6

This entry is part of a series, Cambell meeting the challenges»

Creating a New Life
By Bruce Campbell

You didn’t choose to be sick, but you can choose your response. By deciding how you are going to live with illness, you can make your goal living the best life possible under the circumstances. In doing so, you shift from a focus on what you have lost to a positive one: where you want to go and who you want to be.

This shift was described by actor Christopher Reeve, who was paralyzed from the shoulders down in a riding accident in 1995. He wrote in his autobiography Still Me that over time he “began to come up again” as one does from a dive in deep water. He gradually stopped wondering, “What life do I have?” and began to consider, “What life can I build?”

Focus on The Future

The first key to building a new life is to shift focus from the past to the future, from what is no longer possible to what can still be achieved. However severe your illness, the losses you have experienced are not total. Whatever your losses and limits, they still leave you with options and choices. By focusing on what remains under your control, you can maintain a positive spirit and increase the likelihood of improvement.

There is evidence that a positive attitude has health benefits. It is easy to see why. A positive attitude reduces frustration and stress. This attitude does not deny pain and suffering, but rather puts emphasis on problem-solving and finding what works.

Patti Schmidt described how she reoriented her life in her article “Coming to Terms with a Life I Didn’t Plan.” She writes that after acknowledging that her illness had changed her life irrevocably, she was left with the question: Now what? She made some changes in thinking to accept that there were some things that had been important that she would have to let go of. For example, she decided to accept that she wouldn’t be the homemaker she had been before. But she also decided to focus on those things she could do, rather than on those she couldn’t, adjusting her goals to her abilities.

So it may be helpful to look at your illness in a way that draws attention away from loss toward positive elements, toward what you have gained through being ill, what remains, what you can still do. Some patients even come to see their illness as a gift. Joan Buchman wrote in an article posted on this site that that keeping a gratitude journal helped her “to treasure what I have right now.” She writes that through the journal she recognized that before becoming ill “I was not on a track for happiness and peace.

Because of FMS, I have had the opportunity to find out what is really important for me to live a fulfilling and meaningful life.” For her gratitude means “appreciating what you have and making the most from it. It’s about finding out that you have more power over your life than you previously imagined. ”

Prioritize

Having less energy means doing less. Of all the things you want to do and that others expect you to do, which will you choose? There is a need to prioritize. One way to help you prioritize is by keeping for one week a chart of “How I Use My Time.” For each hour of the day, jot down one or a few words to describe how you spend your time, using categories that are meaningful to you. Here’s one list: work, housework, family, spouse/partner, friends, exercise, hobbies, TV/entertainment, time alone, rest and sleep. At the end of the week, analyze to see if your use of time is consistent with your values by rating each as “OK,” “+” (want to do more) or “-” (want to do less).

This is how one class member described her process:

I have always been a “Type A” personality. I was struggling with myself to maintained my “everything must be perfect” mentality. I was killing myself trying to live up to my own set of standards. I knew I had to make changes and listen to my body if I was ever going to see any improvement in my health. I started by listing what was important, what absolutely must be done and worked from that perspective.

Nourish Yourself

Between what you feel you have to do and the suffering imposed by illness, it is easy to let positive things slip out of your life. But we all deserve pleasure and enjoyment. If you have things to look forward to, you help yourself in an important way. The enjoyment of positive experiences reduces stress, replacing it with pleasure and building a positive sense of self-esteem.

There are many ways to nurture yourself, many forms of pleasure. It may be physical pleasure that comes from exercise, laughing, taking a bath, listening to or playing music or from intimacy. Or the enjoyment and satisfaction from keeping a garden, painting a picture or completing a crafts project. Or the mental pleasure that comes from enjoying the beauty of nature or from reading a book. Or the spiritual satisfaction of meditation or prayer. Here’s how JoWynn Johns expresses the pleasures opened to her by solitude:

Even though I have always been a lover of the arts, in solitude I’ve developed a more profound appreciation of them. I respond more wholeheartedly to familiar and new literature; to the pictures, wood carvings, and pottery in my room; to the prints, photographs, reproductions of paintings, and needle art I study in books and journals; to music…Experiencing these works alone, without distraction, I find they touch me more deeply, transforming my way of seeing and inspiring my imagination.

Create New Meaning

A powerful antidote to loss is to develop new interests. Having a project to commit to or artistic pursuits offer a sense of purpose. Helping others shifts you from preoccupation with your situation and your suffering, and gives a sense of meaning. Many report finding new meaning in helping others, through participating in a support group or offering help informally. Some have started support groups or lobbied for better recognition and research funding for CFIDS and fibromyalgia. Others have taken the opportunity to return to art or crafts that languished. Taking advantage of newly-available time, they start new hobbies or resume projects they had put aside during their earlier, busier lives. Others see their illness as a challenge and find their sense of purpose in trying to understand illness and to expand their area of control. Whatever they chose, they found new ways to bring meaning to their life.

One way to bring meaning is to describe what you’ve learned about life from being ill, summarizing your understanding of how to live with long-term illness. One student in our program wrote: “I am not the person I was, and I probably won’t have the same kind of life I thought I would. But whether or not I recover, I try to bring as much meaning as possible to my life now and to value the core qualities in myself that have not changed. I try to remind myself that I still make a difference to other people, and I can still contribute to their lives.”


You might bring meaning to your new life by stating rules for living well with chronic illness. Here is what JoWynn Johns wrote:

1. Accept myself as I am now. I’m not the person I used to be, nor am I the person I wanted and expected to be at this point in my life. I am an invalid. I’m brain damaged. Had my injury resulted from a traumatic accident, neither I nor anyone else would expect me to live normally. But my brain damage is more subtle, of unknown cause. That makes it harder to realize that I am actually damaged and unable to function as I once could.

2. Accept responsibility for taking care of myself. I didn’t make myself ill. I can’t make myself well. But I sure can make myself feel better or much worse by the choices I make about how to live. If I were caring for an injured loved one, in distress, how would I take care of her? Would I expect or allow her to do chores that I knew would make her feel worse? How would I make this dear person as comfortable as possible? Well, I am a dear person, and I’m also the only one who can take care of me.

3. Embrace solitude and silence. Being with other people, especially in groups, being in busy places, noise and activity make my symptoms much worse. Over time, though, instead of feeling isolated, abandoned, and lonely, I have come to appreciate solitude and silence. In solitude, I get my mind and my peace of mind back. This enables me to read, and write, and think, and do needlework, and draw–all of which give me pleasure. I’ve learned to enjoy the pleasure of my own company!

4. Practice letting go. I can make myself very unhappy by thinking about all that I’ve lost. But I don’t want to be unhappy! So I work at letting all that go, not letting it hang around to make me blue.

5. Give thanks. I’m thankful for the time I have now. I never had enough time in my past life. Now I have time to pay attention to small things around me, to pay attention to myself and get to know myself, to pray and praise and pamper. Only by staying inside my envelope, living by my guidelines, can I feel good enough to appreciate having time. This motivates me to live the way I have to.

Although this is not the life I wanted, it’s a good life nonetheless.

Summary

Chronic illness has profound effects, changing every part of our lives: how much we can do, our ability to work, our moods, our relationships, our finances, our hopes and dreams, and our sense of who we are. But, even though we may not have control over the ultimate outcome of the illness, there is much we can do to improve our quality of life.

This series did not offer a cure for CFIDS or fibromyalgia. Rather it outlined coping skills that can help you improve your quality of life, if you take responsibility for those things that are under your control. I hope you can manage your illness in a way that helps you control your symptoms and enables you to improve to whatever level is possible in your unique situation. And I also hope that, even though you may not have the life you expected, you can nonetheless create a good life.

Bruce Campbell: Self-Management (Four Parts/Steps)

This entry is part of a series, Campbell self management»

Living Well with Long-Term Illness: The Role of Self-Management

By Bruce Campbell

When you first developed CFIDS or fibromyalgia, you may have thought you had a lingering short-term illness. But at some point you realized rather than resuming your previous life after a brief interruption, you were faced with the prospect of adjusting to a different and more limited life.

As long-term illnesses, CFIDS and fibromyalgia require that you adopt a different role as a patient, one we call being a self-manager. With short-term illnesses, you often can rely on a doctor to provide a solution. But CFIDS and fibromyalgia are different. Doctors have limited powers, because there are no medical cures for either illness and medications often have limited effectiveness. With long-term conditions, more responsibility falls on the shoulders of patients, as day-to-day managers of their illness. You know your situation better than anyone else, because you live with it on a day to day basis. You may seek help from experts, such as doctors, but, in the end, you are responsible. Your decisions and lifestyle will go a long way to determining your quality of life with long-term illness.

Acceptance and Hope

As a self-manager of a long-term illness, your success will depend on the attitude you have and the skills you develop. The patients we have known who have done well have all had a realistic, yet positive attitude that combined two apparently contradictory ideas: acceptance and hope. Acceptance means that they acknowledged that they had a long-term condition that imposed limits and required that they adapt. They did not try to ignore their illness, nor did they expect it to disappear. They recognized that they had to adjust to ongoing symptoms and limitations. But neither were they resigned. They had a determination to improve and a confidence that they could find ways to feel better, even if they were not able to restore their old life. (For some examples, see Dean Anderson’s account of his experience with CFIDS and other articles in our Success Stories series.)

We share their view, believing that it is realistic to think that CFIDS and fibromyalgia patients can find things to help them feel better. Medications and self-help strategies may not cure CFIDS or fibromyalgia, but they can help reduce pain and discomfort, bring greater stability, and lessen psychological suffering. We call this approach realistic hope. Even if you aren’t able to restore your old life or to live the life you had expected, you can adapt to the limits imposed by your illness and find meaning by living the best life possible under the circumstances.

Dr. Charles Lapp made the same point when he wrote in the foreword to our course textbook that the patients he has known who have done well “all share a positive attitude and willingness to adapt. They take control of their own lives.”

Developing New Skills

As a manager of a long-term condition, you also face the challenge of developing new skills and habits that will promote a better quality of life.

One skill is learning about your illness: understanding your symptoms, the treatment options available to you, and your sources of support. Sources of information about your illness include your doctor, libraries and bookstores, the Internet, patient organizations such as the CFIDS Association of America and the Arthritis Foundation. Perhaps your most valuable source of information is you. You live with your condition on a day-to-day basis and know it intimately. Through self-observation and simple record keeping you can learn a lot about your body’s needs, what helps you and what hurts you.

Another skill is seeking help from professionals. Since the relationships you develop with doctors and other health care providers are crucial, it is important to find people you trust and feel comfortable with, and for you to take an active role in your care.

A third aspect of self-management is experimentation. Because everyone is different and no single medication has been found to be widely helpful, patients must experiment to find what works for them. What helps one person may be ineffective for another; a treatment that is effective for a while may become ineffective. We call this process of experimentation being your own CFIDS or fibromyalgia scientist. You are both a researcher and your own research subject, as you try various approaches to find what works for you. We recommend that you change just one thing at a time and that you keep written records of your experiments. Usually only a few minutes a day are needed. For more on logging, including samples logs, see Chapter 7 in our textbook.

A final skill useful for self-managers is problem solving. Because your illness and other parts of your life are constantly changing, you are faced with the necessity to adapt. Taking a problem-solving approach can enable you respond to respond effectively to your always-changing situation. We suggest you use a three-step process that is described in detail in Chapter 2 in our textbook. The keys are to consider a variety of possible strategies and to recognize that a solution may require a combination of several approaches.

Five Challenges of Long-Term Illness

Self-management is appropriate for long-term illness for a second reason. Not only does long-term illness bring symptoms that persist; it has comprehensive effects, changing how much you can do, your moods, your relationships, your finances, your hopes and dreams for the future and your very sense of who you are. Living with long-term illness means much more than managing symptoms. Controlling symptoms is just one of many challenges you face as a CFIDS or fibromyalgia patient. Here’s how to apply self-management to five of the biggest challenges of long-term illness.

Managing Symptoms: CFIDS and fibromyalgia usually have multiple symptoms and often each symptom has more than one cause. An experimental approach utilizing a variety of strategies is usually the most effective response. Many patients address symptoms such as pain and poor sleep by using medications, both over the counter and prescription. Experimentation is usually required to find medications that are effective and to discover appropriate dosages.

Making changes in your daily habits and routines, which we call lifestyle adjustments, can also be helpful. The most effective for most people is pacing. Many patients experience repeated cycles of push and crash: fighting against the limits imposed by illness, then collapsing in order to recover. Pacing offers a way to bring stability by adapting your activity level to your limits. (For more, see the chapters on Treatment Options for Fatigue, Pain and Sleep and Pacing in our course textbook or the series of articles titled “Treating CFIDS and Fibromyalgia.”)

Controlling Stress: Stress can be a challenge for anyone, but it can be doubly difficult for people with CFIDS or fibromyalgia. Being chronically ill adds new stressors to those you were already confronting, things like the discomfort of symptoms, isolation, financial pressure, strains on relationships and uncertainty about the future. Complicating your challenge, CFIDS and fibromyalgia are very stress-sensitive illnesses. They seem reset our “stress thermostat” so that the effects of a given level of stress are greater than they would be for a healthy person.

Learning ways to control stress have big effects on both symptoms and quality of life. People in our classes often report that they use several forms of stress reduction, such as deep breathing, meditation, relaxation tapes and massage, in combination with stress avoidance strategies such as having a regular routine and avoiding stressful situations. (For more, see the chapter on Stress Management in our course textbook or the article “Key 7: Manage Stress” in the series “Ten Keys to Successful Coping.”)

Getting Support: Serious illnesses like CFIDS and fibromyalgia create great strains in families and test other relationships as well. The unpredictability of symptoms and of emotions make daily life difficult for everyone. Family members and friends may take on new, additional responsibilities while suffering losses themselves. At the same time, patients often feel isolated both physically and psychologically.

Given limited energy, patients often have to set priorities for their relationships. We call this relationship triage: making explicit decisions about whom to include in your support network, concentrating on the more valuable or necessary relationships and letting others go. Creating relationships with fellow patients can be a powerful antidote to the isolation of long-term illness and the frustration of not feeling understood. (For more, see the chapter on “Improving Support” in our textbook or the article “Key 8: Seek Support and Understanding.”)

Managing Emotions: Strong emotions like fear, anger, grief and depression are common reactions to having chronic illness. Such emotions are a normal and understandable response to being in a situation in which life is disrupted and routine is replaced with uncertainty. Unfortunately, CFIDS and fibromyalgia seem to make emotional reactions even stronger than before and harder to control.

Self-help strategies, sometimes in combination with medications, can help manage the emotional aspects of chronic disease. For example, the chapter in our textbook on emotions lists twelve actions to take in response to depression and eight strategies for anxiety. (For more, see the chapter on “Managing Feelings” in our textbook or the article “Key 9: Honor Your Emotions.”)

Adjusting to Loss: Chronic illness brings with it loss and the accompanying emotion, grief. While grief is usually associated with the death of a loved one, it can occur after any loss and chronic illness brings great losses to most patients. Loss presents you with a double challenge: to grieve the absence of the person you used to be and to create a new life.

While a few patients recover and return to their former lives, most end up making an accommodation to illness like that described by CFS patient JoWynn Johns: “Gradually, I came to accept the idea that perhaps I never could go back to my old life. I began to let go of my goal of recovery as I had understood it, and to replace it with the idea of restoring quality of life through building a different kind of life than the one I had known before CFS.” (For more, see JoWynn’s article “What Recovery Means to Me,” or the chapter titled Beyond Loss in our textbook.)

Conclusion

Chronic illnesses like CFIDS and fibromyalgia require long-term adjustments and have comprehensive effects on patients’ lives. An effective response is self-management, which means taking an active role in managing your condition. By learning new attitudes and skills, you can respond effectively to the challenges of illnesses that don’t go away

Biological Link Between Pain And Fatigue Discovered

ScienceDaily (Apr. 9, 2008) — A recent University of Iowa study reveals a biological link between pain and fatigue and may help explain why more women than men are diagnosed with chronic pain and fatigue conditions like fibromyalgia and chronic fatigue syndrome. Continue reading

The Beginning of My Fibromyalgia

This entry is part of a series, my fibro»

Hello Everyone,

My personal story began about 3 1/2 years ago. My wife decided that I needed to get a check up, seeing I had not had one in about 20 years I agreed to it. Let me start by saying, I felt fine at the time. Some aches and pains that I attributed to the aging process, I was 52 at the time, but with my dad dying at 59 from Colon Cancer I figured maybe I should get checked out. Continue reading

Chronic Fatigue- What Exactly is Chronic Fatigue

by Hailey Harris

Chances are you have heard of Chronic Fatigue but like most people, understanding this condition can be a bit confusing. Over the years, information about Chronic Fatigue has increased with a number Continue reading

Chronic Fatigue Syndrome – Diagnosis Challenges

by Hailey Harris

Today, it is estimated that more than one million people in America live with Chronic Fatigue Syndrome. However, centers that work with disease and statistics also estimate that for people with this condition, 80% are not even diagnosed.
Continue reading

Amazing Benefits Seen in Chronic fatigue Sufferers Who Use Vitamins and Supplements

Amazing Benefits Seen in Chronic fatigue Sufferers Who Use Vitamins and Supplements by Hailey Harris

Chronic fatigue sufferers see amazing results using vitamins and supplements for Chronic fatigue. Why is this? Well, there are many reasons why vitamins and supplements work well for Chronic fatigue. Continue reading